My Story (23 yo, took proscar for 16 months)

me too same now 2.4 year off 28 yo with chronich gastritis heart same problems after 6mo of use sides since 1st pill
dont know what to do
we just only wait
big sides started after 1an half year of stopping
now pain every where insomnia eveen with benzo
but im not loosing faith . i wont end my life .

2 Likes

I’m sorry to hear what you’re going throught.

I hope you’ll recover.

1 Like

Yesterday and today I’ve been short of breath to the point that I’m always thinking about my breathing. Nothing normal about that. Right now, have chest pain, squeezing/tightness feeling. Been experiencing chest pain on and off for more of this year.

So I did some internet searching for young people with heart problems, and found the story of a 25 year old woman who had heart problems. They worked on her, did tests, did a heart transplant (!), and yet 3 months after her transplant, she continued to have problems. It was found out that she had mitochondrial disease.

Upon looking up mitochondrial disease, I fear it’s what I have. It explains all of my symptoms. It can cause heart problems (angina, heart attacks, shortness of breath), gastrointestinal problems (I’ve had this for years), urination issues which I’ve had for many years, muscle weakness and fatigue which I’ve had all year, vision and hearing problems which I’ve had for a few years, diabetes which I THOUGHT I had, learning disability which I have (diagnosed in 2018, started drug 2016 quit in 2017), lactic acidosis (I will go into detail on this in a bit), and other issues. I listed the relevant ones to me. Guys, this is what I truly think I have, which if I do, is horrible.

Upon thinking that I have mitochondrial disease, I finally requested an appointment with the Mayo Clinic in Rochester, MN. If I’m going to die young, I want to at least have a CONFIRMED diagnosis of what the hell is wrong with me, and what caused my suffering and eventual death. I’ll probably have to get a muscle biopsy, which should be fine, as I’m willing to go to great lengths to find out the problem. Hopefully I have enough money for this, if I don’t then I’m wasting my time and yours.

To explain the lactic acidosis. So my understanding is that this is a buildup of lactic acid in the body. I’ll try to explain all of this briefly, but the summary is that I think I’ve had mitochondrial disease my whole life (or at least as early as 16), and finasteride exacerbated it.

So heres the story. I first suffered from heart-like symptoms at 16. Had shortness of breath so bad, it took me one hour after gym class to fully catch up (this was during lunch I remember, was too afraid to eat cause I just wanted to breath). Would spit up blood as well, everyday. Basically appeared to be heart failure. Would feel a pressure in body that would move around every few hours. Would start in left arm, then go to neck, then chest, then right shoulder, then right arm. I’m thinking this was lactic acid buildup. Ate really healthy, prayed, and after 4-6 weeks I got better and didn’t experience it again for a few years.

At 19, I’m doing a workout at the gym. I over exert myself on a machine, and start to feel weak, short of breath. Go to sit down somewhere, my dad walks by, says I’m pale. Go to the er, get checked out, “nothing wrong”. Had a tight/squeezing chest everyday for one month. Also had the same lactic acid feeling as when I was 16. It was like a ball of pressure that would appear in a place, then move later in the day. It was awful. Ate really healthy, actually lost 20 pounds, eventually felt better after 4-6 weeks. Very similar to the incident when I was 16.

Never had any heart problems until this year, in february. Woke up at night, was weak, nauseous, fatigued, sweating, couldn’t say more than one word, tight painful chest, almost passed out but didn’t. Went to er, blood pressure was 140/82, they do tests, determine I didn’t have a heart attack, send me home. but ever since then, on and off I’ve had the same heart symptoms, just like when i was 16 and 19.

So now I think I’ve had mitochondrial disease since I was at least 16. The lactic acid buildup thing is what’s got me convinced. That’s just not normal to have that at that young of an age. Now it was never diagnosed, but it sure seems like thats what I had looking back. So, I think finasteride has exacerbated a condition that I suspect I already had, and I am going to the Mayo Clinic in Rochester, MN to determine this. I don’t have a date yet set, but am awaiting their call to set up an appointment.

Sorry that my spelling and grammar are horrible. I write a lot better than above, it’s just that this is such a horrible way to live and has consistently gotten worse. It’s hard for me to be motivated to care about seemingly trivial things like grammar when there’s a not insignificant possibility that I have a serious permanent disease that has robbed me of my youth and will probably lead to a premature death. Of course, I sincerely hope this is NOT the case, that maybe it’s stress that is causing problems (and I am stressed and have been since I was 12 in all honesty, but that’s another story, and not stressed 24/7, but generally stressed). But that whole lactic acid buildup is what’s got me convinced. I didn’t even know about that until this year when an alternative health practitioner suggested it to me. Now I see that mitochondrial disease can cause it, so it’s got my suspicions up.

One other really interesting thing to note. The alternative health practioneer (who people swear by) that I’ve been seeing since late last year has, upon evaluating my body, always prescribed Vitamin B-complex supplements (contains, B6, B12, B1, and others). So, she’s detecting that my body needs this. Well as it turns out, the supplements recommended to treat mitochondrial disease include Vitamin Bs! Also, when I took L-Arginine (or Carnitine? cant remember) years ago when I had pain in my member, it helped. Well, this is also recommended as treatment for mitochondrial disease! Also, COQ10 is recommended, and while I haven’t taken that, I think others here have and say its helped them. So basically, the treatments that have helped me are recommend to help mitochondrial disease. So thats another reason why I think I could have it ( but of course I don’t want to, I just want to know what I have and not be in the dark).

My doctor in Germany also prescriped me a high dosage Vit B Infusion cure.
I have to start up soon, muscles become weaker and weaker.

What vitamin B12 did you get? I mean the form and the dose

Methyltetrahydrofolate, 400 mcg, taken twice per day. Bottle is called “Veeva Theanine & Magnesium”

I think this is a mitochondria problem. The scary thing is that if it is, I don’t think there’s a cure.

For over a year now I’ve been suffering from strange symptoms. Some have gone and not returned, others come and go, and others persist. The lingering ones are chest pains (squeezing, tightness), shortness of breath, daily nausea, fatigue, heart palpitations, and sometimes feeling faint. Also some exercise intolerance.

Now while I don’t have an official diagnosis, the research I’ve been doing leads me to being very sure I have Coronary Microvascular Disease.

Your heart has major arteries. This is typically where things go wrong: one or more of them gets blocked and you have a heart attack. But your heart also consists of smaller arteries that branch off from the main ones and deliver blood to the heart. With CMD, the tiny arteries are damaged (the endothelium) and cannot properly deliver blood and nutrients to the heart. And that’s when angina occurs (micro vascular angina).

Now this is very sad for me to have at 27. There is a treatment being worked on but it’s not yet out. But it’s sad how my quality of life has taken a nose dive. I struggle to eat 1600 calories a day. I spend ~2 hours a day just eating (not counting cooking or cleaning up). If I eat too much, I’ll feel like I’m going to pass out or have a heart attack. And the thing is that IM RIGHT. My heart IS struggling to keep up. It’s NOT anxiety, or at least not exclusively anxiety. Of course I’m nervous to have this condition. But all I can do is take one day at a time and hope it either goes away (which it has in the past, although the space between flare ups continues to decrease) or I die instantly and end this nightmare.

Anyways, I thought I’d mention this in case any of you have similar struggles and symptoms. It seems like no one else here does though, which is good, but in all honesty makes me lonely and sad. Why did I have to be born such a freak?

1 Like

Eating is the last remaining pleasure. I have become fat too. Live more and more isolated on my own. Have no heart palpitations but methabolic syndrome and and thousand other symptoms. Too fatuiged and driverless for any sport.

An update.

I started lexapro 2 weeks ago and it’s solved my anxiety and panic response, which is nice. I can’t say I notice any side effects from it, but it is still early. I started with 5 mg/day and now I’m at 10 mg per day.

I’ll try my best to explain the main issue I’m still dealing with. It has to do with eating and digestion. I’ll just explain my symptoms rather than speculate as sadly I haven’t much of any tests done for it.

So I can’t seem to eat enough food in a day. I keep losing weight, currently an 129 pounds which puts my BMI at 19.6. I get full somewhat easily, but here is the problem. Sometime after eating a meal (so not a small amount of food unless it’s something really dense like a desert) I will experience: nausea, weakness, high heart rate, cold hands and feet, tight heavy chest, sweating. I’ve never vommited but I’ve come close. Also have come close to passing out when I used to panic, but I don’t panic now (probably due to lexapro). This has all happened as recently as this early morning. I woke up around 5 am feeling off. Didn’t have any of the above symptoms but knew that if I sat up or got up something would happen. Sat up and sure enough it did. Felt nauseous and my heart rate was so high. I wear a device that tracks it and I have a screenshot attached where it shows it was 100, but it was way higher. It was closer to 140 but the device I wear, I think it reads the more consistent heart rate you have within a 2 minute interval. I was able to bring it down relatively quickly to around 100 or so, but I do wish the chart had caught it. Anyways, so I’m laying up in bed and sure enough my hands and feet get cold, i have chest pain, feel weak. I can taste food on my breath but I last ate 7 hours ago. I also noticed my urine smelled kind of sweet but I’ve been tested for diabetes multiple times recently and do not have it.

If anyone has any ideas as to what I could be suffering from I would be grateful. I do have some ideas but I don’t want to anchor anyone to them and i do have a history of over speculating so I’ll stay quiet. It’s nice to not panic about all of this, but it’s still miserable to suffer from.

I also notice my heart rate hit 49 about an hour before this event. Seems pretty low, no?

@Wings any updates?